Tag Archives: Cerebral palsy

Creep and crawl challenge

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We are adding a new intervention, BrainHighways. This helps integrate primitive reflexes so that the big brain will be more dominant. The big brain (Cortex) is responsible for advance skills like speech and social interaction, but is overpowered by the baby brain (midbrain and pons) if the baby brain was not integrated. The baby brain matures, or is integrated, when baby creeps and crawls. Nathan missed out on much of these on because of his cerebral palsy (limited ability to move his limbs). We were also in a hurry to get him to walk, not knowing how important creeping and crawling was to brain development. But anyways, we’re making up for the lost creeping and crawling time.
As a result of hours and hours of creeping floor time, I’ve notice Nathan’s ability to answer my questions or respond to my commands have shortened.
I realised how challenging it is to ask Nathan to do something super hard for him. My fears and frustration crept in again. I was crying all over again wondering how I could get Nathan to do, and like, exercises that I know will change his life. Maybe as a direct response to my frustrations, Nathan started hating creeping and crawling. He started to bang his head on the floor as a violent protest and be excused from the exercises. Even I wanted to stop the program. But I know I would hate myself for not continuing with one of the few programs that have great results for children and adults with special needs.  

In have been blessed with The Son-Rise Program(r), which helped my find my way out of this dilemma. These are the changes I made:

1. Change my belief that the exercise was hard for Nathan and it was hard for me to motivate him.  

2. Let go of the times when he does not want to exercise….until the next invitation to creep again.

3. Think of each exercise as an investment for tomorrow’s exercise, instead of a task that just has to be done today. During the exercises allowed him to rest, to make his mind drift and return before asking him to move again. In other words I allowed him to simply enjoy the exercise and not be pressured to do it. I used to pull and tug him to get his creeping laps done until the 30minute time was up. That led to so much resistance, eventually whining/crying and then head banging.

4. Be present with every creep or crawl. I tuned in with my attitude of enjoying the songs I sang while creeping and crawling, instead of constantly looking at the clock asking “when will this finally be over?”

5. And of course, I said my prayers whenever I was emotional too weak to keep trying. Those really have the best results!

Amor, by they way, also benefits from BH, but really enjoys it and even asks me to creep and crawl with her. 

In the photo: L to R: Amor, Ian and Nathan creeping to build their Brainhighways.
https://brainhighways.com
  

Anything is achievable

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When I see a 3-year-old, climb up on the wrong end of the slide, I think, “Wow, strong kid!”

When I see my 7-year-old climb up, turn around half way and slide himself down, I think, “FANTASTIC!” Even with his Cerebral Palsy (limited ability to walk or move lower limbs), Nathan can achieve anything he sets his mind on doing! While celebrating his climb, I must have sounded like a whole stadium cheering for their favorite sports team.

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Never say never

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When Nathan’s doctor reviewed his brain scans at 2 months of age, he suggested Nathan may never walk. Nathan has cerebral palsy, affecting his brain’s ability to control his trunk and leg muscles.

Look at a little stuntman today! He keeps daring to challenge his balance.

Never say never. There is more time for Nathan to learn to run, jump or even play soccer if he wants.

When I discovered the son-rise program, I threw out all the rules that made me control Nathan’s movements and behavior. With Son-Rise, for as long as Nathan was safe, I gave him full control and allowed him climb chairs and stand on table tops. In a month, even his physical therapist said, “It looks like Nathan woke up new muscles.” His posture was much better.

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Son-Rise vs. Conventional therapy

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Today, Nathan did something special for Ria. He showed her that he could step up onto the swing with minimal assistance…3 times! (Nathan also has cerebral palsy and challenges walking and balancing). A few weeks ago he asked for Ria’s help him climb the same swing. It was necessary for Ria to carry almost his entire weight to get him on the swing. At that time, he couldn’t even hold on and had to be put down almost immediately.

This incident shows the power of son-rise and the amazing rate at which a child can accomplish anything…even if the child has neurological limitations. Find the child’s motivation and encourage it. Soon you’ll find his potentials are limitless!

Had this been conventional therapy, the therapist would identify targets based on what the “standard” child does. Say for example stand on one foot for 10 seconds or hop on one foot (Nathan still cannot do these). Repetition, not motivation, will be used to try to get Nathan to achieve this target. And of course since Nathan thinks, “what’s in it for me?” He will not exert energy to achieving the goal. After several repetitions, very slow progress will be made, making us feel that maybe my child will never get far.

When Nathan was 2 months old, doctors told us he may never walk or he may have learning difficulties. Son-Rise tells us his potentials are limitless!

Physical Developments

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Last week Nathan had another developmental assessment (for the nth time) just to establish baseline (again!) for our new Singapore Neurologist.

At the assessment, the Physical Therapist said that Nathan does not look like he has cerebral palsy (limited mobility of legs) at all . She said, “He may be tip-toe walking from sensory or accustomed/patterned walking. But a child with CP wouldn’t be able to do that “…as she pointed to Nathan climbing into a hamper. Nathan also showed-off other skills like walking backwards, with assistance.

I didn’t know if I should be upset because I wasn’t confident in her ability to diagnose. I mean Nathan was born premature and needed a respirator in his first 3 days of life. Oxygen deprivation affected the area in his brain responsible for walking. All his doctors and therapists in Japan and the Philippines have confirmed his CP.

On the other hand, maybe I should be super excited that Nathan has progressed so much that they cannot detect his CP anymore, other than tip-toe walking???

A few months back, in Japan, Nathan’s Physical Therapist did say it looked like Nathan woke up new muscles after his Son-Rise Program. With more time and constant use it those new muscles, improvements would be inevitable.

More proof that son-rise can fix anything neurological! Yes, there is a mountain in front of me, but slowly I shall chip it away until it flattens itself!

Son-Rise elements that helped:
1. Give child full control.
Whenever Nathan wants to climb in table tops, so be it (just ensure safety). By giving full control, the child learns, “I can achieve anything I set my mind on doing.” Many times autistic kids are stopped from doing many things: touching buffet tables, getting some else’s fries, running around, flapping their hands, etc. They aren’t given enough control and encouragement to pursue further.

2. Kids always do things (“isms”) for a reason. If you spend enough time joining them and investigating what it is they enjoy about their “isms”, you will soon discover how those “isms” benefit the child. In Nathan’s case he needs extra sensory input (from climbing and standing on table tops) to help his brain “recognize” his legs and thus improve balance and muscle tone.

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Sleeping and pooping better

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Nathan is sleeping and pooping better! I guess a lot has to do with time and energy spent on our son-rise program.

Nathan now enjoys standing on everything, chairs, tables, even the swivel chair. Since his balance is constantly being challenged, he has to put his whole body weight equally distributed on both feet for better stability. This is something his Physical Therapists (since he was 2 years old) have been asking him to do, or for me to help him keep his body weight on both legs to strengthen his muscles. He’s doing this on his own and correcting his body posture making his abdominal muscles to work just as hard. The stronger abdominal muscles must be the main reason why he has better bowel movements.

I believe this is the main reason why he poops almost every day now compared to every 3 or 4 days. His pooping schedule has been good for the past week or two. I hope this is a permanent change. The only other contributing factor I can think about is that I moved his prune juice from after breakfast to after dinner.

Nathan is also sleeping much better. Probably because son-rise takes up a lot of energy and he will get tired at the end of the day and sleep well through the night.

When Nathan was a baby we thought “colic” was the explanation of his sleepless, crying nights. It stopped for a brief period. When he was 3 years old, I remember logging his crying nights. In a month he would average 15 nights of crying, sometimes more. That’s 50% of the time. No wonder I would get just as cranky.

When we went to China for stem cell injections, I remember thinking, “If this will at least improve Nathan’s sleeping pattern, it will be a big improvement.” Crying, sleepless nights was reduced to about 25%.

At age 4 1/2, we opted for anti-epilepsy medication due to his abnormal EEG, also in the hopes of alleviating his autism symptoms. His crying sleepless nights stopped. There were only occasional crying nights. Note: there were no other long-term improvements in terms of autism symptoms. Its been more than a year since medication started and I’ve been feeling maybe his medication dose does not match his body weight anymore. He hasn’t started crying (well, not frequently) but he was getting up in the middle of the night and staying up, singing, for hours and falling asleep when it would be time to get up already. Sometimes he’d be really groggy at school or I would just keep him home. In the end, we decided against increasing medication. When I get brave enough, we’ll work on tapering his medication.

That’s his sleep history. But since this month, Nathan has been sleeping on time, no crying episodes, sleeping all through the night, and waking up in a good mood in the morning. I do hope, this trend continues.

Taking time out for out door sensory therapy

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It’s a little hard working on Nathan’s son-rise program when his twin sister and younger brother are home, like on Saturdays. So today I decided to take Nathan out for a walk.

A full-time son-rise program would recommend that the child stays in the son-rise program playroom all the time. The room is designed specifically to remove all distractions so that the child’s focus will remain on the son-rise facilitator. A conducive environment can help enhance the growth of the child. True enough, Nathan performs his best in his son-rise room.

These are some of the reasons why it is not the best idea to bring an autistic child out…but I’ll consider this a break and exercise for both of us.

1. Nathan has to pass by all the fire extinguishers on the way out. It doesn’t matter what I say, or even that I am around, as long as he gets to touch the attention-grabbing fire extinguishers.

2. If I had Nathan’s attention, he could easily read “FIRE” and a lot of other words but the red color just really catches his attention. Watch the video.

Passing through all the fire extinguishers on the way out

3. I guess the outdoors is a great way to stimulate the senses. Just feel the cold breeze on your face, the spikes on the bushes, the bounce as you put your weight on the bushes, the texture of the grass, the heat from wearing a bonnet in the spring 🙂 . With all that sensory input, who would want to listen to Mommy?

Sensory therapy outdoors

4. It wouldn’t matter if that video was 4 minutes or 30 minutes long. Nathan will find something to “ism” away with and ignore me. In the end, I had to carry him to the front of our building and encourage him to walk home.

5. Of course, on the way back, we have to pass through the fire extinguishers again!

Taking time to get home

Challenging his balance

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This video seems ordinary. Even a 3-year-old can do this. But Nathan has cerebral palsy and autism. When he was dismissed from the Neonatal Intensive Care Unit, the doctor said he may not be able to walk. But today, he decides to challenge his balance, not only by standing on a swivel chair but also by twisting it with his lower limbs.

All his excitement and energy to do things on his own is coming as he progresses in his son-rise program for his autism.

Music Therapy – now also like people behind the instruments

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Nathan has always loved music and instruments. Now, he’s starting to show interest in the people behind the instruments. Watch how he touches the pianist’s face. He also verbalizes his wants more.

After drumming with his hands, he asked for drum sticks (I didn’t get that in the video). What was amazing was he resisted mouthing the drum sticks. His drum sticks at home are filled with bite marks. I guess this is were joining his mouthing “ism” is now paying off. Watch also how he gets excited at he goes for the lady’s face.